Clyne, Naomi

Abstract [en]

The aim of this study was to examine how patients suffering from CKD on maintenance haemodialysis experience their life situation. The focus was on how treatment encroaches on time and space and how patients experience care. The rationale was that this knowledge is necessary to provide professional support that takes into consideration a person's whole life situation.The experiences of patients with chronic kidney disease (CKD) undergoing maintenance haemodialysis have been studied in many quantitative studies, which translate patients’ subjective experiences into objectively quantifiable data. However, there are few qualitative studies examining the experiences of these patients’ life situation and expressing their experiences within the context of a nursing and caregiver's perspective.Data were collected by interviews with 41 patients between the ages of 29 and 86 years who participated in the study. A content analysis was used to identify common themes that describe the patients’ experiences of their life situation.Three main themes were identified,‘not finding space for living’,‘feelings evoked in the care situation’ and,‘attempting to manage restricted life’. The first theme‘not finding space for living’ consisted of two sub-themes:‘struggling with time-consuming care’ and‘feeling that life is restricted’. The second theme‘feelings evoked in the care situation’ consisted of two sub-themes:‘sense of emotional distance’ and‘feeling vulnerable’.The patients in this study indirectly expressed an existential struggle, indicating that encroachment of time and space were important existential dimensions of CKD. The findings indicated that caregivers were not always aware of this inducing a sense of emotional distance and a sense of vulnerability in the patients.Caregivers in dialysis units have to consider haemodialysis patients’ experience of a sense of emotional distance in their relationship to caregivers. Nurses and doctors need to create routines within nursing practice to overcome this.